Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Sending you a big hug and praying for you! Horsley Re: Visible Worship-Death & dying content Deb,Glad to hear had a better week. We all know how we need tocherish those good times. Audrey also had a much better week with onlya few very quick almost unnoticable seizures, a welcome time after thebad week she had had. Amie and Doyle are still undecided about tryingAudrey on the cocktail again. Se had such bad seizures so they are notin the mind set to try again. I can't really say as I blame them, itwas scary her seizing so many times, plus since the neuro has said theseizures are coming from the brain stem it is worse. So happy to hear the new nanny is working out. And you are right aboutthe quirks, of course, we don't have any!!!!!!!!!!Audrey has a nursethat comes in 30 hours a week and that is working out great. She is alittle older than me and a grandmother herself. She took care of Audreyfor about three days and all was well then she told the kids that shewasn't going to be able to take care of Audrey because she reallydidn't want to work that much. Well another nurse came for a couple ofdays and he wasn't working out as well and out of the clear blue thefirst nurse, Joan, called and said she would like to come back.Yippy!!!!!!As it turned out, Joan was afraid of getting too attached toAudrey but it was already too late. She said she went home on thatFriday and cried and prayed all week end, finally her husband said shemay as well take care of Audrey because he knew that was what she knewshe had to do. SOOOO, Joan is back and we are all grateful, she isreally good with her. I still go down everyday even though I am nottaking care of her as much, but now I can be Grandma part of the timeand not always the nurse. And this is good.Deb, did you call Hospice? I know a while back you had mentioned it andI was just wondering about it and if it is working out for you if didcall them. Enjoy each and everyday with , as I know you do. Try not to thinkahead too much because I know that that can really get you down. We areall so lucky for having these wonderful special children, they areteaching us so much about love and ourselves. To watch Doyle and Amiewith Audrey is so amazing and I know your mom feels the same way whenshe sees you with . Keep us all posted, you and your family are in my prayers as are all thefamilies on this site.God Bless,Kathy grandma to Audrey, 18mos Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Sending you a big hug and praying for you! Horsley Re: Visible Worship-Death & dying content Deb,Glad to hear had a better week. We all know how we need tocherish those good times. Audrey also had a much better week with onlya few very quick almost unnoticable seizures, a welcome time after thebad week she had had. Amie and Doyle are still undecided about tryingAudrey on the cocktail again. Se had such bad seizures so they are notin the mind set to try again. I can't really say as I blame them, itwas scary her seizing so many times, plus since the neuro has said theseizures are coming from the brain stem it is worse. So happy to hear the new nanny is working out. And you are right aboutthe quirks, of course, we don't have any!!!!!!!!!!Audrey has a nursethat comes in 30 hours a week and that is working out great. She is alittle older than me and a grandmother herself. She took care of Audreyfor about three days and all was well then she told the kids that shewasn't going to be able to take care of Audrey because she reallydidn't want to work that much. Well another nurse came for a couple ofdays and he wasn't working out as well and out of the clear blue thefirst nurse, Joan, called and said she would like to come back.Yippy!!!!!!As it turned out, Joan was afraid of getting too attached toAudrey but it was already too late. She said she went home on thatFriday and cried and prayed all week end, finally her husband said shemay as well take care of Audrey because he knew that was what she knewshe had to do. SOOOO, Joan is back and we are all grateful, she isreally good with her. I still go down everyday even though I am nottaking care of her as much, but now I can be Grandma part of the timeand not always the nurse. And this is good.Deb, did you call Hospice? I know a while back you had mentioned it andI was just wondering about it and if it is working out for you if didcall them. Enjoy each and everyday with , as I know you do. Try not to thinkahead too much because I know that that can really get you down. We areall so lucky for having these wonderful special children, they areteaching us so much about love and ourselves. To watch Doyle and Amiewith Audrey is so amazing and I know your mom feels the same way whenshe sees you with . Keep us all posted, you and your family are in my prayers as are all thefamilies on this site.God Bless,Kathy grandma to Audrey, 18mos Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Sending you a big hug and praying for you! Horsley Re: Visible Worship-Death & dying content Deb,Glad to hear had a better week. We all know how we need tocherish those good times. Audrey also had a much better week with onlya few very quick almost unnoticable seizures, a welcome time after thebad week she had had. Amie and Doyle are still undecided about tryingAudrey on the cocktail again. Se had such bad seizures so they are notin the mind set to try again. I can't really say as I blame them, itwas scary her seizing so many times, plus since the neuro has said theseizures are coming from the brain stem it is worse. So happy to hear the new nanny is working out. And you are right aboutthe quirks, of course, we don't have any!!!!!!!!!!Audrey has a nursethat comes in 30 hours a week and that is working out great. She is alittle older than me and a grandmother herself. She took care of Audreyfor about three days and all was well then she told the kids that shewasn't going to be able to take care of Audrey because she reallydidn't want to work that much. Well another nurse came for a couple ofdays and he wasn't working out as well and out of the clear blue thefirst nurse, Joan, called and said she would like to come back.Yippy!!!!!!As it turned out, Joan was afraid of getting too attached toAudrey but it was already too late. She said she went home on thatFriday and cried and prayed all week end, finally her husband said shemay as well take care of Audrey because he knew that was what she knewshe had to do. SOOOO, Joan is back and we are all grateful, she isreally good with her. I still go down everyday even though I am nottaking care of her as much, but now I can be Grandma part of the timeand not always the nurse. And this is good.Deb, did you call Hospice? I know a while back you had mentioned it andI was just wondering about it and if it is working out for you if didcall them. Enjoy each and everyday with , as I know you do. Try not to thinkahead too much because I know that that can really get you down. We areall so lucky for having these wonderful special children, they areteaching us so much about love and ourselves. To watch Doyle and Amiewith Audrey is so amazing and I know your mom feels the same way whenshe sees you with . Keep us all posted, you and your family are in my prayers as are all thefamilies on this site.God Bless,Kathy grandma to Audrey, 18mos Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hi Deb, I had the sonohysterogram. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Thanks Deb. I was asking for the info to give to a friend. She lives in NY so I figured Dr. Korson would be the closest mito expert for her. I'm very happy with Dr. Cohen. How is doing? I've had you on my mind alot and was wondering if there had been any change. Know that you and your family are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Thanks Deb. I was asking for the info to give to a friend. She lives in NY so I figured Dr. Korson would be the closest mito expert for her. I'm very happy with Dr. Cohen. How is doing? I've had you on my mind alot and was wondering if there had been any change. Know that you and your family are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 well I would recommend Korson to anyone...he is just plain fabulous! Glad you are happy with Cohen though! is the same I guess...he is so up and down all the time its a real roller-coaster ride...the days he seems to feel better and play more make for harder nights...with lots of seizure activity and poor breathing...but we want him to play all he wants and our main objective is that he be happy these final days. It has been three weeks since we were told it would be weeks to months...back then I was hoping for three weeks. Today is my mom's birthday, then Bliss' is at the end of this month...I am always using these things as milestones. 's birthday is the fourth of July...just don't know if he will make it. Altho on good days it seems like it could be another year...but at night, that hope is dashed...the nights are bad...and I am actually glad we don't have a pulse-ox...watching him is hard enough without knwoing what his numbers are... thanks for asking...I know I am been fairly quiet... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi Deb, Thanks for the update! I've also been wondering how you're doing. Hope Bliss' birthday is just as fun as it can be. Give a hug from me. I couldn't get over what a big gorgeous boy he was when I met him in Boston in January. My Mame was always so spindy and FTT (pre g tube!) that I was just amazed to see such a chunky mito kid. Sounds like you're keeping your spirits up as best as you can. I think of you very often and you're all in my prayers. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi Deb, Thanks for the update! I've also been wondering how you're doing. Hope Bliss' birthday is just as fun as it can be. Give a hug from me. I couldn't get over what a big gorgeous boy he was when I met him in Boston in January. My Mame was always so spindy and FTT (pre g tube!) that I was just amazed to see such a chunky mito kid. Sounds like you're keeping your spirits up as best as you can. I think of you very often and you're all in my prayers. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi Deb, Thanks for the update! I've also been wondering how you're doing. Hope Bliss' birthday is just as fun as it can be. Give a hug from me. I couldn't get over what a big gorgeous boy he was when I met him in Boston in January. My Mame was always so spindy and FTT (pre g tube!) that I was just amazed to see such a chunky mito kid. Sounds like you're keeping your spirits up as best as you can. I think of you very often and you're all in my prayers. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Deb, I am so sorry that this has been so hard on all of you. The milestones are what we all live for...another birthday,another easter,etc. I know what you mean when you say somedays it seems like he could go on forever.Somedays I think that this is our last days, when things get so bad. Then vomiting, the pain and then the next day she is great and I feel like I can look forward again. It is just a roller coaster ride but I wouldn't want it to end.Everyday is another good day as long as I have her. We will be out of touch for a while;Tues we gets admitted for her splenectomy.I hope that you have a good couple of weeks (actually more!!!) Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Deb, I am so sorry that this has been so hard on all of you. The milestones are what we all live for...another birthday,another easter,etc. I know what you mean when you say somedays it seems like he could go on forever.Somedays I think that this is our last days, when things get so bad. Then vomiting, the pain and then the next day she is great and I feel like I can look forward again. It is just a roller coaster ride but I wouldn't want it to end.Everyday is another good day as long as I have her. We will be out of touch for a while;Tues we gets admitted for her splenectomy.I hope that you have a good couple of weeks (actually more!!!) Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 I hope it goes well and will be thinking of you a lot. Anne ----- Original Message ----- > We will be out of touch for a while;Tues we gets admitted for > her splenectomy.I hope that you have a good couple of weeks (actually > more!!!) > Dawn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 I hope it goes well and will be thinking of you a lot. Anne ----- Original Message ----- > We will be out of touch for a while;Tues we gets admitted for > her splenectomy.I hope that you have a good couple of weeks (actually > more!!!) > Dawn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 I hope it goes well and will be thinking of you a lot. Anne ----- Original Message ----- > We will be out of touch for a while;Tues we gets admitted for > her splenectomy.I hope that you have a good couple of weeks (actually > more!!!) > Dawn > > Quote Link to comment Share on other sites More sharing options...
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